Saving Henry (2 page)

Holding Henry close to my heart
The Strongin Goldberg Family

T
his is a story about the power of love, and the promise and limits of science. It is a story in which politics, ethics, and advances in reproductive genetics collide. It is a story of the group of physicians who took our family to the outer edge of science and into the whirlwind of national controversy. It is a story about a family's search for a miracle, and the children who lived to tell the story. Finally, it is a story of a remarkable little boy who taught me and countless
what is important and what just doesn't matter at all; who showed me how to live well and laugh hard even in the face of odds you'd have to be crazy—or full of hope—to bet on.

 

I
t was October 25, 1995, and we were in an operating room at George Washington University Hospital in Washington, DC: Allen and me; our obstetrician, Richard Beckerman; a neonatologist; several medical interns; and delivery-room nurses—a not-so-intimate group of ten or so. My relatively uneventful pregnancy had culminated with a diagnosis of intrauterine growth retardation (IUGR), meaning that my baby had stopped growing. I first learned about IUGR and its potential threat to my baby—mainly, low gestational weight—at my thirty-six-week checkup. For ten days I endured a series of fetal stress tests, all of which were normal. But because the baby was breech in addition to the IUGR, Dr. Beckerman decided to deliver by Cesarean section when I was thirty-seven and a half weeks pregnant. Although I was nervous, any concern about the baby's health was mitigated by normal blood tests and sonograms earlier in the pregnancy and the absence of any pregnancy-related complications.

That morning, numb from the chest down, I lay with a surgical sheet draped over me, preventing me from seeing a thing. Allen stood by my side and we waited for the moment when we could hold our first baby for the very first time. I had planned to give birth naturally, so lying there, unable to feel or see anything, was disconcerting.

“What's going on?” I asked Allen, who kept releasing my hand and drifting away to witness the wondrous moment when he would become a dad. “Is everything OK? Can you see anything? Is it a boy or a girl?” I wanted to be part of the action, which was ironic since at the moment, temporarily at least, I had the starring role.
Even more important, I wanted the information that would allay any lingering concerns I had about the baby's health.

Finally, I heard a sweet little cry.

“It's a boy!” exclaimed Dr. Beckerman. “And he's peeing on me.”

At five pounds, Henry Strongin Goldberg was a healthy size, considering the IUGR. I was immediately, and enormously, relieved. I had been worried that if he were only three or four pounds, he might have had to spend a few additional days in the hospital—a concern that, at the time, seemed devastating. As the nurses tended to Henry, the doctor told us that his Apgar scores—a commonly used evaluation of a newborn's physical condition immediately after delivery—were around nine. This was wonderful news, because a baby who scores a seven or higher on the Apgar test is generally considered in good health. But as one of the doctors presented Henry to Allen and me, clean and wrapped in a blanket, I noticed a tiny extra thumb on his right hand. I reached out for him, but the doctor, also having noticed the extra thumb, whisked Henry away to take a more thorough look.

I never even got to hold him.

 

T
he waiting room, meanwhile, was filled with our family: Allen's and my parents; my brother, Andrew; my brother-in-law, Andy; and my sister, Abby, who was, at that moment, nine months pregnant with her second child and experiencing early contractions. They sat and waited, watching television, sipping cold coffee, and playfully placing bets on the gender of our baby, all of which my father was recording on video to make certain he had evidence when the time came to pay up. My brother was sure it was a girl, the others said a boy, while Allen's mom, Phyllis, had the good sense to refrain from weighing in. The conversation was interrupted by the arrival of a nurse pushing a newborn baby down the hall in a plastic bassinet.

“Who do we have here?” asked my dad, leaning over to get a closer look at his new grandson. “Have you looked at him yet? I mean, he's got all the right number of appendages in the right places?” he teasingly asked the nurse, just as he had when my sister, brother, and I were born many years earlier.

“He does have an extra thumb,” the nurse replied. “But apart from that, everything seems to be in the right place. Better to have more than less, I suppose.” Without a pause, the conversation continued: how cute Henry was and who he looked like. No one seemed to realize that with that extra thumb would come a future that none of us had ever imagined.

“He's adorable, look at him!” exclaimed Abby.

“He's got Laurie's nose,” added Andy.

Allen arrived, still wearing the scrubs he had donned in the surgical suite. After a round of hugs and handshakes, Allen looked around the room at the faces of his family. “Did you notice his finger?”

“What finger?” my dad asked. Like the others, he hadn't absorbed the nurse's news.

“Well, he's going to throw a mean fastball because he's got six fingers,” Allen replied. Again, little reaction. None of us knew what an extra thumb could mean. Instead, everyone was moving to the window outside the nursery, where they crowded together to stare lovingly at Henry, lying in his bassinet in a diaper and a soft blue-and-pink striped hat.

I've watched the video of this scene so many times, I know it by heart. It's here when Henry's pediatrician appears in the hallway and shares the following news: “Henry's having a little bit of a problem with the lungs… so we're going to close the curtains now.” With that, the video abruptly goes dark.

 

W
hile I was wheeled from the delivery room to another room upstairs, several new doctors were with my son, conducting a battery of tests, trying to assess his wellbeing. Allen took turns at each of our bedsides. I had given him a video camera as a “new-dad” gift a few days earlier and, with that in hand, he rushed back and forth, filming and then showing me video of our firstborn son. He had a head of lovely brown hair and perfectly pink skin. And he was strapped to an oxygen mask, encased in a bubble, in intensive care. That's how I first got to know Henry.

That afternoon, with my family around my bedside, close friends stopped by my room to congratulate me and meet the baby. Becca Knox and Erica Antonelli, my friends from high school were there; along with Val Syme, one of my closest college friends. The room was filling with flowers, which Allen kept putting in the bathroom because of his allergies, and the phone kept ringing. As much as I accepted people's good wishes and congratulations, I was increasingly filled with dread. I still hadn't met my son. I couldn't tell anyone what was wrong. I couldn't even answer the question of who he looked like. Finally, a doctor I hadn't met before walked into the room. He introduced himself, and upon hearing his title—Dr. Thomas Hougen, head of cardiology at nearby Children's National Medical Center—and registering the look on his face, Allen asked everyone to wait in the hallway. After closing the door, the doctor explained that Henry had a serious, but correctable, heart defect called tetralogy of Fallot.

Those three words meant nothing to me. As the doctor spoke, repeatedly mentioning Henry's heart, all I could think was that this man had to be in the wrong room, talking to the wrong mom, about the wrong baby. “This doesn't make any sense,” I thought to myself. “It's just an extra thumb.” It was as if I were an observer of my own life, like an actor in a bad made-for-TV movie. But Dr.
Hougen kept saying the name Henry, and he kept talking as if he were saying something we needed to know. I looked over at Allen, at the concern creasing and folding the features of his face. I reached down and touched my deflated belly, swollen and pulsating with life just hours earlier. I fingered the thick bandages covering the sutures that held my abdomen together. With that, all the benefits of denial vanished.

Dr. Hougen, a softspoken and kind man, gently and carefully explained that our son, barely six hours old, had four different heart problems. The first was ventricular septal defect, which was a hole between the two bottom chambers, or ventricles, of the heart. The second was pulmonary stenosis, or an obstruction at or below the pulmonary valve. Also, the aorta (the major artery from the heart to the body) lay directly over the ventricular septal defect, and the right ventricle was more muscular than normal. I tried to listen carefully as he explained everything, but as someone whose last hospitalization had been on the day she was born, I just could not make sense of what he was talking about. It was like he was an adult in a
Peanuts
cartoon, emitting
“blah blah blah,”
speaking in a language I didn't understand. When Dr. Hougen showed us pictures of a normal heart and a heart with tetralogy, I couldn't even tell the difference.

In short, Henry was what is known as a “blue baby.” Because tetralogy of Fallot causes lower than normal levels of oxygen in the blood, it causes babies to turn blue. There was a good chance that Henry could have a “blue” episode in the next couple of days, weeks, or months. If he did, he would need emergency surgery to insert a shunt into his heart, which would provide adequate blood flow to his lungs as a temporary fix. And even if he didn't have an episode, when he reached twelve pounds, he would still need to have the defects fixed through open-heart surgery. I listened, but I don't think I heard anything beyond “Henry” and “open-heart surgery.”
My body started shaking uncontrollably. I was desperate to hold this Henry he was talking about; scared that I would never have the opportunity.

“Please,” he said with a look of genuine tenderness, “try not to worry. Henry is going to be OK. This is correctable. It has a ninety-nine-percent success rate. And I know the perfect surgeon.”

I wanted to trust him, to find some comfort in that number—
99 percent
—but I was too busy fighting the terror escalating in me. As a first-time mother at thirty years old, I felt ill-equipped to care for a healthy baby, let alone one with a serious heart problem and an extra thumb. I didn't even know how to change a diaper. With the help of friends, we had chosen a pediatrician, but we didn't have a referral source for pediatric heart surgeons. Everyone we knew had healthy babies.

Dr. Hougen was barely out the door before Allen was right beside me. “Laurie, he's going to be OK,” Allen said as he turned on the video camera to show me, once again, images of Henry taken in the nursery one hour earlier. “Just look at our little guy. He's so beautiful. He isn't going to turn blue. And you heard Dr. Hougen. They can fix his heart. You can't get much better than a ninety-nine-percent success rate. He's going to be OK.”

“How do you know?”

“I just do,” he said confidently. This was the first test of a soon-to-be-well-honed coping mechanism that was partly male and mostly Allen: an ability to fast-forward past the terrible what-ifs and land squarely on top of the best-case scenario.
He's going to be OK.
As our family and friends streamed slowly back into our room, a look of concern on their faces, I decided that I was going to believe Allen and those five little words. I was going to believe in them with everything I had.

My mom and dad stood at my shoulder, my mom's hand on my hair. I looked up into their loving, worried faces.

“What happened?” my mom asked.

I practiced: “He's going to be OK.”

 

O
f course, I'd be lying if I said that my confidence lasted very long. That afternoon, my brain shuffled through everything I did while pregnant, searching for a reason this was happening; for the possibility that this was all somehow
my fault.
I ate well. I took all my vitamins. I got enough, but not too much, exercise. I avoided caffeine, alcohol, and secondhand smoke. I had done everything right. It just didn't make sense. I couldn't lie there anymore, driving myself crazy with these thoughts, missing out on the first hours of my son's life: A boy I'd never met, and whom I now missed so much it hurt. I had been instructed to stay in bed, given the stitches newly placed to hold my abdomen together, but I willed my body to sit up. I called the nurse, who joined Allen in slowly placing me in a wheelchair. A few minutes later, and sixteen hours after Henry was born, I got to hold my boy.

In a darkened room, well past midnight, in the neonatal nursery, Henry wrapped his tiny fingers around mine and latched his lips onto my breast. My milk began to flow through his body, and I felt a love that I never knew existed. It was quiet and peaceful and safe. There were no unfamiliar people, whispering unfamiliar words. Just a new mom, a new dad, and a beautiful newborn baby. I felt Allen's arm around my shoulders and my son's body in my arms; warm, lovely, and safe as I rocked him to sleep.

 

T
wo days later, Allen pulled our Isuzu up to the hospital entrance, where I was waiting in a wheelchair holding Henry. Allen tenderly put Henry into his new car seat and helped me into the seat in the back, next to Henry. The sun's warm rays filtered into our car, and
the natural light was uplifting. Allen drove below the speed limit, perhaps for the first time in his life, with his left hand on the wheel and his right reaching into the backseat, clutching mine. Ten minutes later, we were in the home we had bought especially for this occasion, just one month earlier.

I had barely slept since Henry's birth. I was up all night feeding him, holding him, and obsessively watching for any signs that he was turning blue. That first week, we spent a lot of time in waiting rooms and hospitals as we visited our growing list of doctors: Henry's pediatrician, his cardiologist, a geneticist. Each day, we learned a little more about his condition and fell a lot more in love with him. During one visit, Dr. Kenneth Rosenbaum, the head of genetics at Children's National Medical Center, explained to us that multiple birth defects—like Henry's relatively low birth weight, extra thumb, and heart defect—are often linked to a broader syndrome. Much to our relief, he quickly eliminated many horrifying possibilities. The only test result we were awaiting was for something so rare Dr. Rosenbaum didn't even bother to tell us its name.